The Bionic Pancreas Moves Closer to Reality

For the past year or so we have been hearing clips about the Bionic Pancreas Project.  I was lucky enough to have heard  Dr. Ed Damiano present about his  work at the CWD Friends for Life Conference in Toronto.  It was the first time that I was truly excited by what was happening in diabetes research.

This was a project that was privately funded and motivated by a father’s love. There was no political agenda to hold things up.  There was only his passion and desire to see his son safe when he could no longer be there to watch him at night.  His drive pulled at my heart and for the first time gave me hope.

This summer, clinical trials are continuing.  More adults are getting to experience life with the bionic pancreas.  More children are getting to experience it as well. According to the latest video, they are now reaching the stage to change the design making things more streamline.  This is moving quickly to become a reality!

Being me, and spending so many years advocating for access to better treatments regardless of income or insurance coverage, I can’t help but wonder what direction this project will take.  To me, and I am sure to Dr. Damiano, this device is the diabetes equivalent of a pacemaker and should come under the larger umbrella of our health care system making it available to everyone who is insulin dependent.

At this stage, they are far from knowing how things will proceed in terms of distribution.  We will have to wait.  While we wait, I will continue to work to see access to insulin pumps and CGMs for all people with diabetes regardless of age.  I will continue to put money into my son’s RDSP just in case he does have to purchase the system out-of-pocket to begin with.  If need be, we will advocate for access for everyone to this life changing technology but for now, I will watch and cheer from the sidelines.  I will hope that this will be the technology that changes the life of my son and all of our children with diabetes (no matter what their age).

Support in the Strangest of Places

I am an avid reader. I have loved to read since I was a child. If I could find a way to read for a living, I would be a very happy and ideally very rich person.  I read everything. I read action books, mysteries, spiritual books, diabetes books, and most recently a book about a mother of a girl who has anorexia.

I am not exactly sure what made me decide to open this book and read it.  Perhaps it is my own struggle with my body image. Perhaps it was the fact that is was a mother telling a story of her struggle with her child's potentially lethal disease.  Whatever it was, this book quickly showed me that being a parent of a child with a disease--any disease, sadly puts you in a club with more similarities than differences.

Brave Girl Eating by Harriet Brown, first hit home when she wrote "you're not to blame, you're not alone, and you can make a difference in your child's life".  What a powerful statement! It needs to be a poster in our diabetes clinics.  It is a statement that each and every parent of a child with diabetes needs to fully understand and embrace.  As I have said before, we carry our own guilt and are further burdened by the misconceptions of others. We need to know that we are doing our very best and that is all that any one can ask.

For some reason, Ms. Brown seemed to make more than one comparison of life with anorexia and life with diabetes.  I am not sure if she knew someone living with diabetes or in her research she found some similarities but she does make reference to living with the disease on more than one occasion.  She also makes many statements that could easily apply to living with a child with diabetes.

She talks about feeling overwhelmed by her daughter's illness and then feeling guilty about it. "I can take a walk, read a book, shut out the anorexia for a little while. But its insider her. She can't get away, not for a second." How many  parents of children with diabetes have felt that exact same way? How often have we felt guilty because we could sleep through the night when our child went away to camp or when we went on vacation and left them with a responsible parent or loved one? It hurts us to know that we can leave it behind but our children can't.

She talks about things like her daughter lying to her about food and again the issue crosses over easily into life with diabetes.  In our case, our children tend to reach an age where they lie about food intake, insulin dosing, or bg level readings.  The violation of our trust is devastating either way and in both cases the lie is brought about by frustrations with a disease. It isn't any better no matter where it comes from. The pain and sadness as a parent is equally overwhelming.

Ms. Brown talks about wondering if her daughter's behavior is because of anorexia or simply because she is a teen?  When my son was small and would fall asleep during the day, I would panic and test him.  Was he sleeping because he was a toddler who was tired or was he low and had passed out? If he threw a tantrum, was he being a child full of spite and temper or was his rage fueled by high blood glucose and therefore he may not completely responsible for his actions? How did I decide? How did I find a balance with punishment? Like the author, I struggled.

In Brave Girl Eating, the author also talks about stigma.  In this case the stigma of a mental illness. In diabetes, we know that there are many stigmas and fighting the public's misconceptions can often be almost as difficult as battling bg levels.  To make things even worse, there are an increased number of people living with diabetes who also are dealing with eating disorders (is it any wonder when their lives revolve around food 24/7) as well as depression.  They must understand this book in more ways than I can begin to imagine.  How painful.

Ms. Brown also speaks to the idea that anorexia has taught her to live in the moment. Ironically diabetes has had a similar effect on my own life.  Learning to live life four hours at a time was the only way for me to cope.  Nothing else mattered. Tomorrow was too far away but his NovoRapid would kick in within four hours and it could fix that high, maintain his perfect reading or be just enough to send him low and create more havoc for me.  Four hours--just get through four hours and then go forward.

As I mentioned, ironically she notes the similarity to diabetes more than once. In learning to live with the new normal of life with anorexia, she wrote, "I told her if she had diabetes, she'd have to test her blood sugar every day; at first it would be a pain, but she'd get used to it.  It would become just one of those things she had to do, like brushing her teeth.  It would become part of "normal" for her."  We know that diabetes is a bit more than testing daily.  We know that you never really get used to lancing your finger each day, but it is something that has to be done...like brushing your teeth.  It is something that you somehow have to come to accept in order to move forward with your life.

Its funny where you find inspiration and camaraderie. I started this book because I was in part looking for insight into my own body image issues.  I finished this book realizing that parents of children fighting illnesses may have many more similarities than we thought possible.  When we open our minds and our hearts, we find support in the strangest of places.

The Weight of Guilt

As I started to read Ginger Vieira’s book Diabetes Burnout, I was hit by an incredible sense of guilt.  Did I push my son too hard? Did I expect too much? I was later vindicated but I was reminded  the overwhelming guilt that comes with being a parent of a child with diabetes…or maybe its just me.

Well meaning people share with us many “reasons” that children develop diabetes and somewhere in the back of our mind’s ( well my mind anyway) we ask was that it? Was that why my son developed this disease? Did I not breast feed my son long enough? Did I feed him cow’s milk too soon? Was vaccinating on schedule a bad thing? Was there a family history that we missed? I know that I didn’t feed him too much junk.  I know that it wasn’t two years of chocolate bars that did this to him but maybe that first time that he seemed off months before I should have realized that he was seriously ill and that it wasn’t just the flu?

Eventually I realized that I couldn’t spend all of my energy feeling guilty about the “what ifs”.  Diabetes took up enough of my energy on its own…but that led me to a new source of guilt.  Had I denied my other son because diabetes took so much of my energy? My older son never complained but it was a question that popped into my head now and again.  We went to diabetes related events and he met many new friends. He always seemed to have more fun than my child with diabetes.

I was there for my oldest son in his events and activities.  He knew that when there was an issue that required someone to stand beside him, I always did.  I was also there for the softball games, school events, report card days, sick days, and driving school.  I was pretty sure that I had successfully found a balance.

But what about a balance with diabetes and my youngest son? Did it take over everything? Did he hate me because I punished him for diabetes related offenses? Did he feel that I had robbed him of his childhood by focusing on testing and injecting when he wanted to play and forget it all?

My children seem to be well-adjusted. We have memories of family vacations and times spent with each other. We communicate regularly.  I guess I didn’t scar them too badly–I hope.I didn’t have to feel guilty about robbing my children of their childhoods.  Diabetes changed things but it didn’t destroy it.

One other area of guilt seems to always flutter on the sidelines.  I know I am not alone in with this one. I have heard other parents mention it. Its the guilt that comes when our children go away and take diabetes with them.  It’s that time when they go to the other parent’s house, spend the night with a friend or with grandparents.  It’s that time when they go to camp for a week or move away from home. It is then that a new guilt moves in.  I no longer have to think about diabetes 24/7.  Oh I still wake at night. I still look at a meal and automatically count the carbs and dose insulin in my head.  I wonder what my child’s blood glucose level is at any given time.  I worry and wonder if he is taking proper care of himself, but I have a break.  I  don’t really have to be awake at night. I can enjoy that extra glass of wine without fear of dealing with a low later that evening.  I don’t have to remember to test after that walk.  I have it easy.  It’s not fair.  The guilt becomes stifling.

As a parent, I want to carry the burden of this disease for my son but I can’t.  I want to give him a break but I can’t even if I  get one! It doesn’t seem right. I must be a terrible parent…but maybe I am not.

When my son is with me, I help him with care when he wants.  When he has an issue and he is away from me, he calls and asks for help.  We talk about readings…when he is ready.  We talk about other things as well.  I work hard to make diabetes the last thing I ask him about not the first.

Guilt doesn’t get me anywhere. It’s a backwards looking emotion. Life didn’t come with a guidebook.  My children were not born with a manual attached.  I do my best. We all do.  Guilt must be released not harbored…and I do.  I have made mistakes but my kids are okay.  They are strong.  They are relatively healthy.  They are smart.  They do me proud.  Why waste energy with guilt? Move forward and smile.  It’s the only way to go.

Gifts like this make me realize that all is very well indeed.

Mom! It looks like I've Been Shot...Again

In honor of Throwback Thursday, here is a humorous post from May 4th, 2010. Enjoy!

Last night I wrestled my son to the ground and later heard about the consequences. You see said child, admitted that no he hadn't been spending his time mulling over the perfect gifts to purchase for his devoted mother for either Mother's Day or her birthday.  In some countries I am sure his actions would have constituted a hanging offense but in our house in meant that I tackled him, interrupted his Wii game, pinned him down and tickled him.  Thankfully I still have a few pounds and an inch or two on him so I can still win. 


The downside to this fun when you have a child on an insulin pump who wears sites in his leg is obvious to those of us who live there.  After the screams of "I've gotta pee!!!!", came the grumblings of "You pulled out my site!".  With the cost of pump supplies being covered for us, it felt good to say "Well, just go and change it."  Once upon a time, I would have cried at the $20+ that I had just wasted even if it was in the name of fun. 


Being a teen, my son was in no rush to change the site and Mom had visions of highs for the rest of the evening.  The longer he waited, the less insulin he would get, the higher his bg levels would climb I was sure.  Again, being a teen and being my son, he stated that the site was salvageable and he had simply taped it in place.  I was worried.  Was the site really still in? Yes he assured me as he headed off to the shower.  His grumbling about being bested by his mother had been replaced by the comment that if Mom could wrestle him then wrestling with his brother should once again be allowed (It was discontinued after brother's elbow met son's eye and left a nasty shiner).  I attempted to burst his bubble but he still was quite proud of his logic as he headed off for his marathon shower. 


Once he undressed he proclaimed "Mom, I look like I have been shot!"  What did that mean? He told me that there was blood all over his leg.  I said that was it, the site was gone! He had to change it.  He proceeded to shower and I never got to really check out the damage.  He kindly left the dead and bloodied site in the shower for me though.  Ironically he was disgusted when he found it on top of an envelope later.  I had taken a picture and left it for him. He told me that the site should be in the garbage! Um, who left it in the shower to start with? Oy!

Another Corner Turned

The weekly bg reading review that I had dictated in September has long gone by the wayside. I occasionally ask about readings on the phone or over text conversations but I try to keep it to a minimal.  If my son gets into real trouble, he calls or texts me with his SOS.  Diabetes care is remaining in the periphery of our relationship as he strives to make it on his own. We still talk about care and I still like to know what is going on but I think I truly have turned a corner in my new role and acceptance of it.

A couple of weeks ago, I suggested that we have a phone conversation about his readings in the coming days.  My son told me that he had an upcoming appointment with his CDE.  I then suggested that we wait until after the appointment and then we could discuss what was or wasn’t done and see how we felt about it.

My son thought that was a great idea and we set our new date to chat.  Last week that day arrived.  I knew that my son’s readings had been uploaded by his educator (my son has managed to lose two cables for his pump and I feel bad contacting our rep for a third one). I went online to see what the readings looked like.

As I opened the screen I laughed and laughed.  There were a lot of boluses and insulin cartridge fills but I only saw two readings. I laughed some more! For a change, it was not me who got to look at no data and try to sort things out. It wasn’t me to go…”What gives?” only to be told that he had used other meters but didn’t have them with him. This was not my problem.  I laughed some more
.
It felt good to have that burden lifted. Whether there were or were not readings, I was not the one who would bang their head in frustration and begin the tedious task of trying to track down information. The smile remained on my face.

Later that evening I called my son and we discussed his appointment.  It had gone well. He had readings on a different meter and the two of them had discussed the area my son knew was a problem.  My son was pleased that he wasn’t told what to do but asked his opinion on the problem.  Suggestions were made by both parties and my son left happy.

Mom wasn’t needed.  For a change, that felt okay.  My son was happy. He had made his own decisions. He had been able to talk to someone about his care and share his knowledge. It was a win-win situation as far as I could tell.

I will still call and talk readings. I will still be here to troubleshoot and to cheer from the sidelines but my son really is taking charge. He can do this. I always knew he could but the fact that he is doing it makes me feel a bit better…well for today anyway.

Looking from a distance

Today is Saturday’s snapshots. At first I was a bit troubled by this.  What does my life with diabetes look like these days? Well its different than even one year ago.  Should I show pictures of my son’s life? I decided that I shouldn’t.  My pictures would be of my life with diabetes…living with it at a distance.

Now when I find test strips at the bottom of my purse, I don’t swear and wonder how they got there, I think of my youngest son and smile instead.



















My conversations are often done via text rather than in person…

















But we still get a chance to spend time together and share care when we can.

Fighting the Darkness

 
May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)

I love being part of Diabetes Blog Week because of the vast array of topics that make you stretch yourself, think and explore new avenues.  Today’s topic is one that is very personal and very difficult. I have dealt with some of the dark issues surrounding being a parent and living with a child with diabetes in last year’s webinar “Normal is Just a Setting on the Dryer” as well as throughout my blog over the years.

Most likely you have heard about the strong correlation of diabetes and depression for people living with the disease.  Diabetes presents many management challenges in learning how to be a pancreas.  It presents financial challenges in being able to afford the best care to be able to obtain your best bg levels.  Diabetes is often looked upon as something that the patient themselves caused.  Bg levels and A1cs are often judged as “good” or “bad”.  It is therefore not surprising that the stigmas and challenges of the disease can quickly become overwhelming.

As a parent, we do not have the same direct issues as our children with live with diabetes but in some respects perhaps its a bit worse because we carry the blame for it all. We ache when our child is having to deal with any of those issues. We desperately want to take all of the pain away from them.  We feel that we would gladly carry this disease to save them such pain and anguish.

Parents struggle with their guilt.  How did we let this happen to our child? What could we have done differently? Should we have breastfed longer? Was it a vaccine that caused this? Did we pass along faulty genes? It is our job to protect our children and we may feel that we have failed to protect them in the most profound of ways…we allowed them to develop type 1 diabetes.
Now I know intuitively that this is not the case. I know that I did not cause my son’s disease but was it my fault that he was so sick before he went into the hospital? I am educated. Shouldn’t I have known something was wrong? If I am honest, I did know that something was wrong. One day in the summer prior he was pale and sick…but it was just one day and we assumed he had a bug.  Before his diagnosis when he had thrush and was not himself, we had taken him to the doctor.  He said my son was fine.  I did take him back to my own doctor a few days later when things did not improve. I could not have prevented this but still the guilt lurks.

The guilt can get in the way of parenting a child with diabetes as well. We have so many issues swarming in our heads.  We have failed our children once by allowing them to get diabetes (yes, parents may have a bit of a God complex), so now it is vital that we work to keep them as healthy as possible. We get frustrated when our children lapse in their care. We become terrified when they are in the care of someone else. Will they be able to manage? We struggle to find a balance between allowing our children to learn on their own and the need to look after them at all costs.

In my own case, there were times that I would reprimand my son for forgetting a meter or strips when I really should have thought of them myself.  The frustrations of not being able to keep his bg levels always perfect, of seeing him sitting inside waiting for a low to come up when his friends were playing outside, the injustice of him having to carry so many supplies and medical devices just to go to a friend’s house would overwhelm me and boil over into anger at the silliest things. I would then worry that I had left my child with nothing but horrid memories of an ogre parent.

As my son has grown, I have come to my biggest challenge yet…letting go and finding my new place.  For the past 14 years, my one focus has been being a mom.  I managed to stay at home with both of my boys as they grew. I was able to devote a lot of my time to diabetes advocacy efforts and the care of my children which included 24/7 diabetes care for my youngest son.  My nights were spent fighting highs and lows.  My days were spent reminding him to test and bolus and helping him to count carbs.

One day it all changed. My son decided to move back to his home town and felt it was time for him to learn to care for himself. I was lost. I would wake up in the night and there was no one to test. I would sit down at a meal and I didn’t need to count those carbs. Yes, the world of diabetes advocacy still existed but did it still need me? There were many new parents who were just as passionate and they had children at home to speak about.

I had experienced depression before when dealing with a child with diabetes. As I mentioned, the frustration, guilt and anxiety can be overwhelming.  I got through with the help of some amazing online friends as well as supports in my life that were there to pull me out when I got too far down.  It was important for me to talk to people who lived there and got it, as well as people who had no clue but just wanted me to enjoy life with them.  That balance saved me on more than one occasion.

Having my son move away was different. Yes, I had many friends how also had children move away but their children had moved away for school.  Their children were out of high school and they seemed to have strong identities of their own.  I didn’t feel that way. Yes, I had a strong identity but in part that was because I was a parent of a child with diabetes and I spoke firsthand of bg testing and the challenges of raising him. Who was I now? I was not sure. I had started to expand myself and create a new business venture but it was not heading the way I wanted it to…and then my son was leaving. I was now a complete failure. I had no idea how to get out of the darkness this time.

Once again, my heart knew I wasn’t a complete failure or a bad parent (just as it said I was not the reason my son was diagnosed in the first place) but I still felt that way. The move wasn’t personal it was about a young boy wanting to stretch his wings and go back with lifelong friends rather than continue to hang out with his mother in a city that had not provided the same life-long friends. I had to get over myself. It has taken a lot to get used to the change. It has taken a lot to find my new place even in his life.

I don’t have a cure to get out of the darkness that can accompany raising a child with diabetes. I don’t have an answer that has worked for me. I still stumble and wonder “what do I do now?”  I am lucky in that I have a very supportive partner who is patient. I am slowly dipping my foot back into a bit of advocacy work.  I am working to find my way in life.

Diabetes is a challenge in itself but it also brings many hidden challenges for those who live with the disease inside of them as well as for those of us who just carry it in our hearts. The only thing we can do is move forward.  Seek help when you need it–from friends, from family and even from the medical or counseling community. There is nothing wrong with support. It is the only thing that gets us through and its strength can carry us through anything.

Three Things that Raise My Dander

Its Diabetes Blog week once again and I am so excited to be able to participate once again!  Today’s topic comes for Kim of Texting my Pancreas and asks us to discuss diabetes issues that get us really fired up!

Since I began my website many years ago, the issues that I have been passionate about have grown but have always retained one common thread–improving the lives of people living with diabetes.  There have been some successes and there is still a long way to go but watching the diabetes community come together and create change has been the best part of the journey.

The first issue that got my dander up was the inequity I saw years ago in the way people with diabetes were treated when it came to the Disability Tax Credit.  As I worked on this issue, I saw that those who were approved for the credit were people who were able to stand up to the government and were willing to fight for this issue. If you were uncertain or did not know how to take on this battle, you would be denied the credit while your neighbor was approved.  There seemed to be no other logic behind how this credit was applied to people living with diabetes.
With a lot of help from other people living with diabetes and a fabulous mentor, I was able to see this issue change dramatically. Fairness was obtained and change happened to the legislation surrounding this issue. I was very proud of all the works that was done here but there were still more issues to tackle.

As I learned about diabetes and became more involved in the world of advocacy, I came to realize how difficult it was to get an insulin pump if you didn’t have the very best insurance coverage.  Once again I was outraged.  Why should it matter what sort of job you have or where you work to get the best possible care for your diabetes?

Since I first began dealing with this issue, things have changed.  Most provinces in Canada now offer provincial health care coverage for insulin pumps and supplies for all children under the age of 18.  That was great but what about older children who are just starting out in the workforce? Some provinces decided to give these young adults until age 25 to get better insurance…some provinces didn’t.  Today, I continue to work with others to see that all people living with diabetes have access to the best devices available to manage their diabetes care regardless of age. This means that I would like all governments to cover insulin pumps, supplies and Continuous Glucose Monitors for people with diabetes regardless of age.  This will happen in time. I am confident.

No matter what your age or where you live, you deserve access to the very best in medical care.  It is important for governments (and insurance companies) to understand the broad sweeping benefits that come from best care practices. If a person with diabetes is able to maintain their bg control to a close to normal range and they are able to anticipate highs and lows with the aid of CGM technology they are better able to perform at work (which means less down time and more money paid to the government in terms of personal tax), they are less likely to be in the hospital (costing the government money), and more likely to have a better overall life satisfaction which in turn further leads to increased productivity and once again an increase in taxes paid to governments. The cost outlay is far outweighed by the benefits to the system as a whole.

At the moment, I live in a province that covers insulin pumps for people with Type 1 diabetes until they reach the age of 25. It does not cover CGM technology.  I have less than 9 years to advocate for increased funding to cover all people with diabetes regardless of age.  In 9 years my own son will be in the position of having to make very serious and real choices about his diabetes care. We will see this change–for him and for all of the other adults struggling to maintain their health despite the heavy financial costs.

Because my son is still in school and has had diabetes since before he went to school, the third issue that I am passionate about is that of children with diabetes in schools. This issue has seen major changes since I first began talking about it over 10 years ago.  In BC, we have seen the power of grassroots parent organizations who have pressured the government into changing its policy on children with diabetes in schools.  I have seen many more individual boards and provinces begin to seriously look at the issue of protecting the rights of children with diabetes in schools.

Once again, this is an issue that many parents and children are not able to stand up and voice their concerns about themselves. I felt that it was therefore my job to help them.  I would (and do) speak to parents on how best to tackle their schools and their issues. I work with boards to help them understand what needs to be done to create change that is fair and just to all parties involved. This is a very complex issue here in Canada. Our children are not protected by a disabilities act. They are protected by the voices of their parents and other concerned adults…but these voices are powerful and making a difference.

Advocacy has always been something that I am very passionate about. I have felt a strong need to stand up for those who may not be able to stand up for themselves.  I have worked for the past 14 years to ensure that people living with diabetes are all treated fairly with equal access to education, medical devices and supplies.  This is a long road.  It has seen many battles won and I am proud to be able to continue fighting the war along side many incredible people.

A Salute to the D-Warriors

Back to it. Back to that new normal life…where diabetes isn’t in it 24/7. It is still strange but this past week with my son was also a bit of an awakening. One in which perhaps more people should be exposed to.
My son was diagnosed with Type 1 diabetes over 14 years ago. He lived with me the bulk of that time. In September he chose to move to finish high school with his lifelong friends. It killed me inside but it was a choice that he had to make.

In the past six months, I have not had to get up in the middle of the night to test bg levels, but I still wake up. I haven’t had to worry about site changes but I still am in charge of ordering supplies. My role has changed. It is still taking some getting used to.

I was thrown back into the fray last week. Diabetes came back into my life in a huge way. It gave me a new respect for my son and for all people with diabetes. It brought a new pain to my heart. I wished that others could have seen what I saw and experienced what my son experienced. Perhaps if more people did, then more doctors would fully get it. Perhaps if more people did then more politicians and insurance companies would understand. Perhaps then more research projects would be funded and there would be a greater understanding and drive for a cure.

My son arrived on a Monday after a 10 hour day of driving. He was high. I asked him what was up. He explained. “I should have set an increased basal rate to cover all of that inactivity driving in the truck. I ate at a fast food restaurant but the meal I chose wasn’t too high in fat. I may also need a site change.”

I looked up the meal that he had eaten. It was a lot higher in fat than he had thought. We discussed extending boluses to cover those high fat meals. We talked formulas and I hoped that he might remember the concept the next time he ate out.

Because of those small oversights, he was high for the rest of the evening. He went through gallons of water and found it hard to socialize when he was spending so much time in the washroom.

His visit continued this way. There were highs. There were logical reasons for them. There were mistakes made. He is only human. Together we worked to fix them. There were injections and new sites. Sites fell out and got kinked. There were replacement sites and more injections to cover the missed insulin and bring him down. There was more water. He spent more time in the washroom.

I was exhausted. He took it all in stride. We discussed strategies. I suggested changing sites a little sooner when he was having highs. He told me that when he got too high he felt a burning in his legs and after a bit he would smell a strange smell. He said it was like his brain was frying because he was so high and he would smell it happening. My heart broke.
After days of “stuff happening”…a bad site, a poor carbohydrate calculation, a bolus delivered wrong, we finally saw him in range for longer than an hour. He was able to sleep through the night without a trip to the washroom every half an hour. He was able to put down the water bottle and enjoy a casual glass of diet Dr. Pepper. The battle was over and he had won. The war would continue another day however.

As he got on the plane for his trip home, my hands-on role ended. I was no longer in the trenches with him until he had another break and came to visit. That was not the case for him. His battle would continue on the plane where I learned after he landed, that the air pressure of the plane would impact the insulin delivery on his pump. Once again, after the fact we would know the reason behind a high or low but were at that point powerless to stop it. We hadn’t known.

How stressful must this be for a person living with diabetes? My son told me how his doctor lectured him when he goes to his appointments (although I am guessing that the bulk of his lectures are just). He stated that he the CDE he was sent to was more concerned with reading him documents than teaching him something useful. He is just beginning his journey of learning to be his own advocate.

As much as I complain about his lack of self care. Each time we talk, I am amazed at how much he does know about his own care. Some of the information he has heard from my lecturing and teaching, as well as the things he has learned at CWD conferences has sunk in. He is a teen and may not always do what he is supposed to but he does have the knowledge when he chooses to apply.

It will be up to him to apply the knowledge. It will be up to him to show his medical team that he is very educated in his care. It will be up to him to decide to take care of his body. It is a huge challenge. As people who do not have diabetes, it can be easy for us to judge and demand better. It only makes sense to take care of you. You will feel better. It’s not always that easy. Stuff happens.

This week was exhausting and I didn’t have the physical toll that he did. I was the coach on the sidelines, offering help when I could. I made suggestions, I took over care, I carried a small amount of the burden but he carried the bulk of the weight.

I could see him sitting in a meeting with his diabetes team and having them see this past week’s readings. There would be questions. Would he feel defensive? I would have. Would he feel judged? I would have. Did he do his best? Yes. Do the numbers look like it? No…and yes. Readings were high, but then we had a victory and things came down…before the next stumble and up they went. Should we have known better? Yes…and no. Yes, he knows to increase his basal when traveling but no he didn’t know the carb counts for some of the restaurant foods. Even with calorie counting software, errors were made. How could we have known that the site that went into his leg would bend—twice? There are so many factors going into managing diabetes. Even for those of us who have lived beside someone for 14 years, we can’t fully understand.

As a parent it is torture. I want to fix this. I want to take it from him. He doesn’t ask me to. He knows that I will do my best. When he stumbles or appears not to take care of himself the way that I would like to see, I get upset and even angry. I understand the toll that it can take on his body. I know the toll that a causal attitude will take on him long term. I know that he has the knowledge and I pray he will chose to use it sooner rather than later. I don’t always remember the struggle to balance being a teen boy and being a person with diabetes however. It has to be hard.

I won’t quit demanding the best from him. I won’t be able to stop being disappointed when I don’t see adequate testing. I will take this week and use it as I go forward however. It has been a great lesson to share when advocating for better care for people with diabetes. It has given me a new respect for all that my son deals with when Mom isn’t there to carry some of the burden. It has reminded me of how much diabetes sucks and how despite the fact that a lot has changed in 14 years, we still have a long way to go.

The Countdown to NO SLEEP!

This morning as I woke up, my first thought was..."This time next week I will have been up during the night to check my son's  bg levels!"  I know that parents who do this every night will be thinking that I am insane but I am actually looking forward to it.

It has been over six months since that fateful day when my son moved back to his home town to live with his father and left me with an empty nest.  I still have a barrage of emotions that flow through me at any given time.  I have been a full-time mom for 20 years and a pancreas for 14.  I felt like I was terminated without notice.  I wasn't. It wasn't personal. It was a choice he felt that he had to make for his own growth. That has been something that I have had to come to terms with...and am still working on.

When my son left, I had a firm plan.  He would be in contact with me weekly.  He would share his readings with me thanks to his new insulin pump system.  We would look over readings and he would learn how to make his own decisions. I would remain as hands on as possible with hundreds of miles between us.

As with all of my plans, it was a great plan.  As with many of the plans that we make in our lives...well it was a great plan but reality was far different. The first month or so we would call each week.  He had issues with uploading his pump information but sometimes it worked.  There would be a lot of missed tests. I would do my best not to freak out and ruin our time together.

Soon he saw his new diabetes team and they had their own plan.  They arranged for my son to see a new educator on a regular basis to teach him how to handle his diabetes care.  Two teachers would confuse the issue.  My friends reminded me of how much I had taught my son over the years.  I had to step back.

I would be lying if I said it was easy to do. I have been a hands on parent for 20 years. I have been a pancreas for 14. I am a control freak. Letting go has always been really hard for me.  Letting go of something that directly impacts the health of one of my children?  Yes, the pain of doing that was physical but I have tried. 

I no longer ask about bg levels every day.  I ask about once a week how things are going.  I ask if we need to have a chat. Does he need to make any changes to his rates? Our weekly chats have drifted further and further apart to the point of the occasional text message that reads "CALL YOUR MOTHER!!!"  Followed by a phone call, a wonderful conversation and said child responding "What do you mean I don't call you? I call you every day."  I reply "in your dreams. We haven't talked in ages."  To which he charmingly replied, "Oh, well I think about you every day."  My children are smooth and have figured out how to appease a mother's bruised heart.

Like I said, the "we will talk weekly" rule quickly was disregarded.  We text daily. I know that he is alive.  He has a life that involves girls, skidoos/quads, friends, and school. Mom and diabetes are relatively far down the list because let's face it, they will always be there (at least in the mind of a 16 year old). 

Occasionally I will tell him that it is time that we chat about his readings. Recently I was struck by the similarity of me saying that and that note on the calendar stating you have to see your diabetes team--tomorrow! When I tell my son that we need to chat and review readings, I instantly get inundated with excuses.  "Well, now isn't good. I had a bad site the past few days and my readings are everywhere."  "I forgot to bolus my breakfast and was high so things are really out of whack."  There is always something but as a great friend reminded me, he knows the whys behind what is going on.  This means that he has learned.  He will hopefully also learn to apply this knowledge but for now at least in hind sight he can say, "Mom, I messed this up and this is what happened."  I guess in the world of diabetes care that is a bonus.

So for today I will count the sleeps until I have sleepless nights for a few days. I will enjoy counting carbs and monitoring testing patterns for part of the Easter holidays.  After that, I will go back to adjusting to my children growing up and being independent.  I will sleep through the night and know that I have taught them well...and pray that a Higher Power will keep an eye on them both when I can't.

 

Insulin 101...It saved my sanity!

I recently began thinking about the most liberating thing that I learned after my son was first diagnosed with Type 1 diabetes. I have always said that it was to take life four hours at a time.  That did help but before I could learn that, I think I had to learn one more important lesson...how his insulin worked.

 

Once I understood how my son's insulin worked both of our lives took a dramatic change for the better. As I have said many times, when my son was first diagnosed he was in DKA and given hours to live.  I knew that they gave him insulin and that is what helped him to survive.  That connection stayed with me long after we left the hospital. I knew that he had to have insulin injected to live but I didn't understand the roles of insulins that he had been given. This lead to battles and frustrations on both my part and that of a confused two-year old.

 

At diagnosis, my son's doctor believed in using the most up to date insulin regimens.  That meant that he was given NPH and humalog for his meals.  Again, I didn't really understand this in my newly diagnosed, muddled mind.  I just knew that he had to have insulin to live.  I had to give him both insulins and he had to eat what the dietitian told me.

 

In fairness to my dietitian, she also told me that if I wanted I could learn to count carbs and feed my son only what he wanted and give him just the insulin that he needed for that meal.  What she said made sense.  Not all bread was created equally and therefore not requiring the same amount of insulin.  Despite knowing that on an intellectual level I was blocked on an emotional level.  He must have all of the insulin I was told to give him in order to stay alive.  This blocked thinking lead to struggles and trauma for everyone involved at each mealtime.  Breakfast could last until lunch and supper could easily run into his bedtime snack.  There were tears on both sides.

 

One day I found an email support list.  I asked for help trying to make my son eat.  A woman, who went on to become a great friend, replied to my email instantly.  She said "Don't force him to eat and just don't give him his humalog."

 

For whatever reason when she said it (or wrote it) everything clicked!  The NPH had a peak. That was what the snack times were all about but the humalog was a rapid acting insulin meant to cover his meals. No meals? No problem. No insulin.  He would always he his small snacks so that was not a concern.  Smaller meals? Well my dietitian had told me how to count carbohydrates and figure out his carb to insulin ratio so that was okay too.

 

My world changed completely...and so did my son's.  We no longer fought about meals. If he didn't want to eat he didn't.  There were no more special meals or catering that I hated to have to do.  I could treat him the same way as I did his older brother. In other words, he could be a kid first and a child with diabetes second.

 

This also meant that we could handle birthday parties in a whole new way.  I learned the carb counts of most party food and he could enjoy meals with the other kids.  He could have cake! Most cake was around 25g CHO which was his snack amount so I would save it for 2pm (which often was when they settled down enough to have some anyway) and he could eat with everyone else.

 

Learning how his insulin peaked and what it was used for was the most liberating thing I could do for my son and my own sanity.  Once that was under my belt, I could work with the other factors.  I could break life down into the four hours of rapid acting insulin life.  One major hurdle was overcome. A small piece of my sanity saved! 

The Blame Game

When a person is diagnosed with lung cancer do we blame them? Do we question their lifestyle and then make them feel ashamed? Do we minimize what has happened to them because they possibly brought in on themselves by not listening to the anti-smoking ads?

 

If a person is young and suffering from dementia do you blame them for drinking too much? Do we shun them because they should have dealt with their alcohol problem before it brought on a much larger issue?

 

We may shake our heads…and they might also.  We may wish that they had chosen a different lifestyle but we often also look at others who lived that exact same lifestyle and are fine.  We wonder why them?  We feel sad, but we do not blame the victim.

 

Why then does society feel that it is okay to blame people living with diabetes for their disease? As a parent of a child with diabetes, we are asked if we fed our children a lot of sugar.  It is suggested as mothers that we did not breastfeed our children long enough to ensure that they developed the proper antibodies to protect themselves from developing diabetes.  The list of non-sense reasons go on to the point that parents become frustrated and angry.  They try to distance themselves from people living with Type 2 diabetes which lives with its own stereotypes in hopes of making the blame go away.

 

People with Type 2 diabetes obviously caused their disease and are therefore to blame for everything. We know that it is a lifestyle disease that strikes people who are overweight, eat only fast food, and are terribly lazy.  It is all their own fault.  Because of their bad behaviors they are the causing  increased hospital costs, increased taxes to pay for those costs, and probably the reason that gas prices are so high!

 

Can you see the logic? You are right, there is none.  Diabetes seems to have a genetic component of some sort that is triggered by something. If we could figure out the hows and the whys, then we would have a cure and everyone would be quite happy.  Sadly, there is no cure. There is no definitive why.

 

As a parent of a child with diabetes, I know that I did not force feed my children large amounts of sugar.  My children were not given sweets when they were younger. They did not have a large amount of processed foods. They were breastfed for differing amounts of times and were both vaccinated on schedule.  Did I do something to cause my youngest son’s diabetes? I pray not but I have enough to deal with without delving into a myriad of “what ifs” on the subject.

 

My son lives with diabetes. He has for the past 14+ years. We have worked and continue to work to keep him as healthy as possible That takes a lot of time, effort and money to purchase the supplies and devices that are best for his care.  The financial cost of keeping him well is nothing compared to the return that the government will get by having a healthy, productive member of society contributing to their tax coffers for many years to come.

 

As person with Type 2 diabetes also faces many stereotypes.  They are overweight and therefore caused their disease.  They are out of shape and live off of fast food. Really? I know many overweight people who do not have diabetes. I have met athletes in great shape who have Type 2 diabetes.  Does body shape make either one of them any less important? Does their age mean that its their fault?

 

Do we blame a child for developing Type 1? No, they are innocent but we can blame their parents. They should have done more! Do we blame adults who find out that they are insulin dependent as well but it doesn’t happen until they are in their 20s?30s? or later? I mean they obviously screwed up somewhere as well right?

 

Are you starting to see the insanity? Why do we waste energy on blame? We do not blame the person with liver failure or dementia for their past lifestyle.  We do not suggest that the parents of a child with leukemia should have breastfed their little one for longer. Why then do we feel the need to blame people living with diabetes?

 

The answer is not changing a name. As Shakespeare says…”What is in a name? A rose by any other name smells just as sweet.”  Well diabetes–type 1 or type 2, is just as rotten a disease no matter what you call it. No matter what the name of the disease involving the improper use of production of insulin is, it is still a disease that happened TO someone. It is not a reason to shun or demean someone.

 

I can think of no other disease that is so misunderstood to the point of creating real danger. A lack of understanding about the serious nature of this disease can result in people with diabetes not having access to the best medications or devices. It can mean that when diagnosed, people with diabetes do not always understand the serious nature of the disease.  It can result in frustration and anger in people living with diabetes when they try to educate the general public, educators and even medical staff about the realities of the disease–its costs and the toll it takes on everyone involved.

 

It is time to end the blame game.  Diabetes sucks.  That is a fact that we must focus on. It is a very serious disease that does not care what color you are, how old you are or how big your wallet or insurance coverage is.  It will enter your life and change it completely.  It will threaten to end your life. It will always hover on the sidelines waiting to wreak havoc on your day. It must be stopped but sadly we must first end the blame and so that we can all focus on the cure.

5 Things that I have learned about me over the past 14 years...

Diabetes has a very steep learning curve.  Some of us have no medical knowledge and yet are forced to learn about giving needles and drawing blood. We must learn about nutrition and exercise instantly.  We learn how to work with our children and help them to understand what is going on in their bodies.

 

In a moment, our world changes. As I have said before, it completely explodes your world and leaves you to work with a new landscape.  It does not end your world, it just ends that naive world in which you may have existed before. It certainly did for me. As we navigate this new landscape, we learn a lot about our relationships and about our children. I thought that today I would look at things that I have learned about me over the years…

 

1. I became more empathetic thanks to diabetes.  I like to think that I have always had empathy.  I try to never judge a book by its cover and I tried to teach my children to do the same.  We never know what is going on behind closed doors or what is going on inside another person’s body. Just because they look well does not mean that they are not struggling with something that we can’t see.

 

Kerri Sparling brilliantly illustrates this point in her book Balancing Diabetes.  If you haven’t read the book, you should do so.  You will read about her response to a dinner conversation in which one person slams a family member with diabetes who “eats whatever they want, and they never test their blood sugars, and they never go to the doctor.” (page 161) Kerri stands up for this unknown person and asks how they know that this person really doesn’t do all of these things? She had tested and bolused at the table without anyone knowing so perhaps this person did too.

 

Diabetes has brought me that same sort of need to defend others.  When you see my son, you think that he is perfectly healthy.  You don’t see his broken pancreas unless you look at his insulin pump and then many would still assume it is his phone.  I don’t want people to think that my son is broken. He isn’t but he does have to deal with things that other young men his age don’t.  He looks after his diabetes privately. He does not show people how much work goes into looking and being as healthy as he is.

 

2. I have an even bigger mouth than people thought. I have always believed that if you don’t like something speak up.  Things will not change if you mutter to yourself.  If you want to see things happen differently then talk to people who can help you to make that change. Listen to their perspective and together work to create something that you can both live with.

 

After my son was diagnosed with Type 1 diabetes, I had a greater need to fix things. I think every parent who goes through this diagnosis of a child has this same feeling on some level. We often feel that we let our child down by allowing them to develop diabetes (boy do we have egos! Like we could have stopped this?) Our only way to “fix” things is to work to make the world better for them.  We learn as much as we can, educate our schools to protect our children, and we work with our diabetes team to get the best care that works for our child.

 

Some people will write letters, lobby government officials, and become very active in educating the rest of the world about life with diabetes.  That was me.  I wrote letters. I started a website. I contacted government officials. I wanted life to be fair and just for all people living with diabetes. I wanted to protect my son and all of the other children out there living with this disease. I wanted to make things easier for them…and I still do. I stood up to administrators and Ministers of government. I learned that they were all just people who had families.  They were not scary people with a lot of power but loving people who were often willing to listen to you.

 

I always knew that I had a mouth. As I said, I always believed in standing up for what I believed in. I didn’t know that if I stood up for something others would stand with me and that together, I could lead people to create serious changes in policies.

 

3. I didn’t know that I could touch people’s lives as much as they touched mine. When my son was first diagnosed, I was lost and felt terribly alone. After a number of months, I reached out to a group of parents online.  They touched my life and helped me in more ways than I could imagine. The inspired me to do more.  I was therefore honored when I was asked to be a part of their Canadian Children with Diabetes Friends for Life conferences.

 

I am a huge fan of these conferences and all that they give to families living with diabetes. Each time that I am at these events, I am humbled and amazed by what I see. Families become empowered and stronger before my eyes. They meet new people, hear new philosophies and get the chance to just talk to people who “get it”.   When I get to speak about issues that I have dealt with and offer ways that have worked, it is wonderful to have people come up to me later and say, “Thank you! I can do this now.” It is something that I never imagined that I would be a part of 14 years ago.

 

4.  I am not in this alone.  Fourteen years ago, I knew no one with children with diabetes.  I was given a phone number of a family diagnosed just before my son and we talked on the phone one day.  It would take us years to meet up.  In the meantime, I would find an online support group that helped me find my way.  It empowered me and educated me.  The members of that group became my family. They had been there, were living there, and had experienced that. They understood milestones like your child lancing their finger for the first time. They got the sick humor of watching blood gush across the lunch table.

 

Over the years, that support team grew.  I found people in my community to meet up with. I became involved in national groups and met new parents who were also struggling. Eventually social media grew and I became involved there finding many more parents and people living with diabetes.  Being able to share milestones and fears gives me the strength to move forward. I are far from alone today.

 

And the fifth thing that I learned? Diabetes makes us stronger than we ever knew! Life presents challenges.  Life as a parent presents challenges. Life as a parent of a child with diabetes adds another level of challenge to the equation. Many people have it worse. Many people have it better. I have cried in the shower. I have sat alone in the dark and shed a number of tears. I have been grateful. I have been frustrated but most importantly, I am still here to tell the story…and so are my children.